Life in the Chair

I can’t believe it’s been almost four months since the arrival of the wheelchair! It has been a time filled with adjustments, grief, exploration, humor, and some abatement of pain and fatigue.

It took me quite a while to get used to driving the thing.The joystick is much more sensitive than the scooter tiller, and I had to have it adjusted in the first weeks lest I go flying off the front porch. I still get frustrated when I bump into door frames or drag an electrical cord (and everything attached) when it accidentally gets caught in one of the six (!) wheels. Fortunately, no animals or people have been harmed during the training period.

Gwenlyn and Nan adding the bling.

I’ve had amazing help and support through this process. Laurie, of course, has been a gem, willing to shift things around in the house to accommodate the chair, making sure there are clear paths, strategizing with me around threshold ramps and doorway clearances. My pals Nan and Gwenlyn showed up on day two with all manner of trinkets and bling to decorate the chair - because I must go in style! My awesome sister Nancy flew down from Bellingham for the day to give me moral support and help to strategize some details (she’s so good at that!). It was as if my dear ones knew better than I what an emotional impact this change would have on me.

And it hasn’t been easy. It’s great to not have to expend so much energy trying to stay upright and use just about every muscle in my body to ambulate across the room. But it’s a constant reminder of the losses, the inability to go for a hike or walk on the beach. It takes a lot of planning just to get myself out to the cottage in the morning and back in the house at night. And I do have a huge footprint wherever I go (which is kind of ironic!).

I’ve had to learn some new body mechanics with this experience. Since I’m always sitting, I have to turn my body in odd ways to reach for items on counters and shelves, to open or close doors, to pick things up off the floor. The first few weeks I had irritating pain in my shoulder blades and finally figured out it was from all the reaching and twisting I was doing. I worked with my yoga therapist on some different ways of moving and reaching and it’s improved, though I still have twinges and need to be mindful every time I reach for something.

The biggest challenge in terms of maneuvering has been in the cottage. I bake a lot, so I have to get myself and my chair into some pretty tight spaces, between the fridge and the cupboards and the island. Turning in that small spot has become an exercise in patience, one at which I don’t often succeed. The chair has an elevator feature that brings the seat up an extra six inches or so, which is very helpful for working in the kitchen. I have become adept at using and modifying tools; I’m quite the expert with the little grabber tool - I’ve even taken it to the grocery store with me to retrieve things off of high shelves. I still use my cane, not so much for walking, but for grabbing doors and gates to open or shut them or for popping on or off a light switch.

I’ve been interested in the difference between the chair and my scooter when I’m out in public. I've discovered that I don’t like being out on the street in the chair – I feel much more vulnerable without that front piece protecting me, like a breast plate. Maybe I project the vulnerability, because I sense people react to me differently. The scooter is sporty, I can have a sense of play on it more so than with the chair, which feels more medical. So for the foreseeable future, I’ll have the chair for indoors and the scooter for out, which feels a bit bourgeoisie – not to mention the outside and inside walkers and a collection of canes strategically placed around the house. This is when I start feeling blessed and wonder and worry about those who don’t have access to all these wonderful tools.

And has the chair done for me what I hoped it would? For the most part, yes. I have a definite reduction of leg pain and fatigue. I still have quite a bit of neuropathic pain in my feet and legs, but most days it is better than what it was. My arthritic knees have gotten a rest! And that balance of movement I’ve been concerned about? Could be better, especially since my trainer has been out of commission for several weeks with an arm injury. But walking has become so difficult now, I’m concerned that the day is not too far off when I won’t be able to walk at all.

And then it’s back to the strategizing drawing board.